When I was a young man, one of my favorite movies was The Neverending Story. The film follows a boy who finds a magical book about a young warrior who is given the task of stopping the Nothing, a dark force, from engulfing the world of Fantasia. Along the way, the boy encounters several interesting and unique characters, including the Rockbiter. Here is a little clip of this big guy in action: https://youtu.be/aj-OpTHixpU
Recently, I have been relating to this guy more and more. He is a big friendly giant. We both get around on wheeled vehicles. I was the guy who would take 1/2 of the piano while 3 others took the other side when moving it in or out of a home. I had big, strong hands.
And now, I have my own “Nothing” now to contend with which causes my mind to think about how strong my body use to be.
This disease is my “Nothing”. It slowly takes away everything with a very perceived darkness and increasing dread. I have had multiple steps of coming to grips and accepting with “I can’t do that anymore” things along the way.
- Accepting that I had played my last set of volleyball. This has been one of the hardest to accept. Volleyball was my favorite pastime, a sport I enjoyed playing with my children, and an outlet when I was feeling anxious;
- Accepting that I couldn’t run around with the kids anymore or coach one of their teams;
- Accepting that I couldn’t make it up or down stairs anymore – where our former bedroom and the kids’ bedrooms are. I can’t help with laundry, tuck my kids in bed, or check on them in their sleep;
- Accepting that I can no longer give bear hugs to my kids or my wife;
- Accepting that a wheelchair was the rest of my future and I will never walk again. My neck muscles are too weak to hold my head so I must wear a neck brace if I am upright for an extended period of time and I recently had to request a harness for my wheelchair because my core muscles are no longer able to support me sitting upright and I slump over;
- Accepting that I needed help taking a shower and other basic functions like cutting my food up, filling a water bottle, and brushing my teeth;
- Accepting that I need help getting up from a seated position to transition/pivot to any other chair or to the bed. Recently we purchased a Hoyer Lift because soon I will need manual assistance to transfer;
- Accepting that because I broke my tailbone from a fall off of my shower chair on the 4th of July that I can’t sit very long in my wheelchair or any non-reclined position without experiencing immense discomfort, in spite of best efforts at pain control;
- Accepting that my bucket list has grown increasingly limited and the dreams of traveling and exploring with my wife are no longer an option. I am fortunate to have good friends who take a flat version of me on adventures and fill my days with joy – thanks Pete and @bonvoyageben adventures); and
- Accepting that there are even more physical limitations and emotional challenges barreling down on me that I am going to have to accept.
The worst of all is how my struggles become Bridget’s “Nothing”, too, as it adds to her plate of concerns and loneliness. She may not experience the physical symptoms of the disease but she has to watch her best friend endure it and be helpless to do anything to stop it knowing the loss that is to come.
The bright spot (what Bridget and I consider to be one of our Pollyannaisms) is that we know that we are living our own Neverending Story. We know that there is more to come. And just like Sebastian had to call out a name to stop his Nothing and begin to enjoy a new life and a new world, I too, have a name that gives me hope for the future. Jesus Christ! As Job exclaimed, in spite of his tremendous suffering, I share his message, “For I know that my Redeemer lives!” This gives me the emotional and spiritual strength to find as much purpose and happiness as I can in each remaining day of my mortal life, despite the Nothings I battle. There is so much more life to live, both here and in the life to come. The eternities are so hopeful that they can brighten any day, even when our Nothing rears its ugly self.
Thank you all for the prayers, the love, the visits, the words of support, & the many acts of service for our family. We continue to be eternally grateful to Tommy and BVA for the remodel of the home so that I have more access to the one place that I can be around my family. We love you all very much.